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Wednesday, November 13, 2013

WEGO Post #13: How Has Illness Changed You?

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge
for health-related bloggers. Each day, they have a different topic for a
short blog post, with a Facebook page for posting links. Today's topic:

EvolutionWrite about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?

Wow, this is a big topic, but I will try not to be too long-winded. The past 11 1/2 years of living with chronic illness have dramatically changed my life. I think their word - evolution - is a good one because for the most part, parts of me that were already present have been enhanced while other parts have faded, in a slow, gradual process of change.

I have always seen myself as strong, capable, independent, and confident, so suddenly finding myself helpless and at the mercy of an unpredictable illness was a severe blow, requiring significant changes to my normal ways of approaching life. Before illness, if I ran into a challenge - sick child, looming deadline, insane travel schedule - I attacked it full-on: push through, do more, sleep less. My life philosophy back in those days was work hard and play hard, though having children definitely began to slow me down a bit. I was also a perfectionist and often put pressure on myself to get it all done and do everything well.

I must admit, those tendencies are still here, under the surface, but I have had to accept that I can not do it all anymore. This has definitely been an evolution, not an overnight change, in slow steps, often one step forward and two steps back. Since I usually operate at about 40-60% (and sometimes even lower) of the energy level and stamina that I had before becoming ill, I have been forced to adjust my expectations for myself. Sure, a part of me still wants to do everything, but I know where my limits are and I work hard to stay within them.

Similarly, I have had to lower my standards - for housecleaning, for cooking, for entertaining, for just about everything. Cleaning is a guaranteed crash, so I just don't even attempt it; I wait for our cleaning service to come every other week (a luxury in the old days but now a necessity) or ask my husband or son to help and often just live with the mess. I do still love to cook and do still have high standards for making tasty and healthy meals, but those meals are simpler these days, as I know I can't spend much time on my feet. In the old days, I would have been horrified at the thought of serving take-out to house guests, but now I know that if we are having visitors, my energy will be especially limited and I need to conserve it however I can. (Coincidentally, my mother called while I was writing this to ask me what I can cook and bring for Thanksgiving dinner! I explained that the 8-hour trip will take all my energy, and I won't be able to do any cooking. She didn't get it, just kept saying what a great cook I am. Sigh...see, in the old days, I would have let her talk me into doing more than I know I can manage, but now, I know that attempting to bake pies the day before a big trip like this would leave me with no energy left for enjoying my family's company. Still evolving...)

I am still very goal-oriented, but the nature of my goals has changed somewhat. I do still have similar writing goals to before I got sick, but I have had to accept a much slower pace of progress. I know I can only manage an hour or so (at most) of productive time per day for writing. Other goals have become simpler, focused on basic self-care: to take a short walk and do at least 10 minutes of gentle yoga a few times a week, to rest when I feel bad, to try to see friends once a week. I do still tend to set too many goals and think I can accomplish more than I can, even though I have adjusted my goals downward constantly.

As for values, I think certain values that were present before have become more prominent through my illness experiences, particularly the importance of family and helping other people. These have always been important to me, but with so many other aspects of my life stripped away, they have taken on a greater emphasis in my life. The experiences of having three of the four of us in our household seriously ill all at the same time changed all of us - we know that those ties that bind us together can never be broken, that we will always be here for each other, and that together, we can face any challenge.

Experiencing severe illness together has left our family more resilient and more accepting of the normal ups and downs in any life. We know we need to roll with the punches and take things one day at a time, so when something bad happens (like last week, when our college-aged son came home very ill), we tend to take it more in stride. Learning first-hand that you have little control over your own life is a hard lesson, but it tends to allow you to handle the bad stuff more readily.

Our experiences have also made all of us more empathetic. It has always been important to me to help others and to feel like I am doing something valuable - that turned out to be my strongest "career anchor" back at the beginning of my engineering career (we had to take all sorts of quizzes on career anchors!). Since becoming ill, though, helping others has become a significant part of my life. When our kids got sick and we eventually found treatments that helped him get back to school, helping others became even more important. Somehow, helping others makes our own difficult experiences feel more worthwhile.

Well, I have babbled on for too long, I think. How about you? How has illness changed you?

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I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.

About Me

I'm a freelance writer who loves to read and cook. My husband and I have two sons, and we all enjoy travel and being outdoors. My older son and I both have chronic illnesses, but we focus on finding joy in every day!